The Sick and Their Sponsors: Who Brings Patients’ Rights to the Policy Table?

AYLIN MANDURIC

Millions of people face steep barriers to receiving treatment for a wide range of diseases – from non-communicable diseases to AIDS. For many, the cost of treatment is an insurmountable obstacle that leads to preventable deaths. This raises the important question of whose responsibility it is to ensure that no one, regardless of citizenship, wealth, or legal status, suffers or dies from a treatable disease. In the face of weak public health infrastructures around the world, piecemeal efforts by charities can only do so much. Even so, medical charities, advocacy groups, and human rights activists can have a crucial role to play in shaping the outcomes of struggles for access. In the late 1990s, the South African government became entangled in a legal battle regarding trade issues because of its efforts to improve access to HIV/AIDS treatment. It eventually emerged victorious – a victory demonstrating the power advocacy networks have to shape an issue with far-reaching implications for human health.

Governments, pharmaceutical companies, and research institutions can work together to broaden access by raising awareness of barriers to access, especially trade-related barriers. Often, however, governments of high income countries and pharmaceutical companies will support policies that increase barriers to maximize profit at the expense of access. Non-governmental organizations (NGOs) and activists can help by organizing movements, and monitoring governments and transnational corporations to hold them to international standards.

Following the end of apartheid, South Africa’s healthcare system was split along racial and economic lines1. The small supply of antiretroviral drugs (ARVs) available was too expensive for most of the population, leading to one of the highest rates of HIV infection in the world. Given these circumstances, the government decided to amend the national Medicines and Related Substances Control Act in 1997. This amendment would allow for compulsory licensing, which permits certain drugs to be produced locally, and parallel imports, which allow for drugs to be imported at the lowest market price2. This action generated an aggressive international retaliation by the pharmaceutical manufacturing sector in the form of legal action against the South African government, resulting in a legal battle that continued until 2001. The case charged that the law violated the Trade-Related Aspects of Intellectual Property Rights (TRIPS) agreement and was framed as a matter of intellectual property theft.

Although initially backed by the home governments of the pharma companies, attitudes towards the case began to shift as its implications became increasingly clear: it appeared that companies were prioritizing profits over the human right to health. Governments withdrew their support and the case fell apart, to be withdrawn amidst a public relations disaster for the pharmaceutical industry3. Throughout the case, a network of public health NGOs and patients’ rights advocates formed and rallied international support for the withdrawal, joined by politicians, policy experts, and hundreds of protesters. Together, they drew connections between the right to health, access to medicines, and intellectual property protection, framing the South African amendment as helping to address a public health emergency, and portraying the plaintiffs in the case as being greedy and inhumane4. They began investigating the reasons for the USD 10,000 price tag for a year’s supply of HIV/AIDS medicines. An Indian drug manufacturer willing to price at USD 350 proved that a substantial portion of drug costs was due to unnecessary mark-up5. Drug manufacturers and medical innovators often try to justify these prices with reference to their own research and development costs, though as the network discovered, much of their research is sponsored by their home governments or through research institutions5. The spread of HIV/AIDS was a worldwide phenomenon that resonated with the concerns of patients and their advocates everywhere. This universality helped unite people in a transnational movement that brought an end to the South African suit.

Alongside efforts to undermine the pharmaceutical manufacturers’ case through truth-seeking, activist groups attended the 1998 World Health Assembly (WHA), where they supported the elimination of trade-related barriers to access to medicines. NGOs in the network also hosted numerous events to keep their cause in the public eye. In 2000, they brought the issue onto the US presidential election agenda. Al Gore, who began his presidential campaign with a negative stance on the South African case, was visited by protesters bearing harsh slogans about access to AIDS drugs during his campaign. Soon after, Gore sent a letter to the Black Congressional Caucus indicating that a change of policy was in order, and that he supported the South African Amendment Act6. Using the power of information, relevant connections to authorities, and support from the public at large, activist groups were able to rally enough support to challenge the position of the pharmaceutical companies5.

This landmark victory is notable in that it suggests that even in the face of the powerful pharma lobby, there is a role for advocacy in helping bring about positive outcomes for access to medicines. This does not mean that the problem has been, or can be, solved by activism alone. Building sustainable healthcare systems begins with acknowledging the value of individual lives, and an appreciation for the long-term benefits of a world with equitable access to necessary medical treatment. It begins with small steps, taken by those who think the issue is important enough to bring to the attention of the most powerful authorities they can reach. Policies will change to improve access when the support for new policies is ample and vocal, and when it becomes clear that the rewards of more equitable access to healthcare outweigh the costs of change. It takes a measure of belief and a measure of action. Civil society as a whole has an important role to play in bringing the issue onto local and international policy agendas.